Does anyone have Neuropathy & chronic pain after CHOP R treatments?

sschulte
sschulte Member Posts: 1
I am new to this site and encouraged to find anyone else living with the difficult side effects after chemo treatments. I am 43 years old and was first diagnosed with follicular NHL in 2005. It was only in my neck area so I received rituxin treatments for a year with very little side effects. I also went through radiation in 2007. The ugly beast reoccured in Feb. 2010 under my arm & in my groin area so I had to go through 18 weeks of ChopR & I finished treatment in late July. I think that I had every side effect that I could possibly have. I was diagnosed with neuropathy close to the end of my chemo because my hands & feet were numb and tingling. My oncologist prescribed Neurotin, and assured me that this was a temporary side effect and told me that it should go away in a few weeks.

Fortunately, my latest scans came back clean, but the neuropathy has not!! It has been almost 4 months since I had chemo and the pain has not subsided at all. I have chronic pain throughout my body, my hands cramp constantly making it difficult to do normal tasks like opening bottles, writing, typing, etc.. When I sit or lay down, it feels like electrical currents are running through my legs which is causing me to twitch. I have been on percocet for several months which only dulls the pain.

When I seen my oncologist a few weeks ago and told him that the symptoms had progressed he referred me to a pain management specialist as well as a neurologist because he told me that I should not still be suffering with this. He also told me that I was the first person that he has treated with this problem. I left his office in tears feeling that he didn't believe me.

I can't seem to find a neurologist that will accept my insurance and I am at my wits end. I have researched side effects from CHOP R, and I have found that many survivors are suffering from these same symptoms, but there is not enough to make this a statistic.

I am seeking anyone that can guide me on any solution or advice on what to do. I am suffering from severe depression due to my pain when I should be ecstatic because I am in remission.

Comments

  • vinny59
    vinny59 Member Posts: 1,032
    pain
    Sorry to hear all that, I just went thru R-Chop, and I too have be blessed to be in remission. I still feel lousy, have back pain, the numbness still happens in my fingers. I hate when you tell your Onc. how you feel, and they look at you like you are nuts! You need to explain to your Onc. that you can't find a neurologist, and maybe he or she can help you get the right Meds to get you thru this. From what my doctors told me, the chemo becomes accumulative, so it's going to take a long time for the drugs to get out of your system. I had head and neck cancer three years ago, and they still talk about the treatment and it's effect's on the way I'm feeling now. I know this doesn't really help you, but stay positive you are in remission....... wishing you well Vinny
  • tcvine
    tcvine Member Posts: 174
    Neuropathy
    Hi Schult,

    So sorry to hear about your difficulties. But, congratulations on being cancer free again!

    I am responding because one of my most difficult side effects has been neuropathy. I was on R-CHOP for 3 (out of 6) cycles when the neuropathy got much worse. I spoke with my onc about it before my 4th treatment and he told me that he was going to reduce my dosage of vincristine because the neuropathy could get worse and could become permanent. (That's what he told me.) With the reduced dosage my neuropathy has not gotten worse, but not better. However, I never let it get to the point that it was as painful as yours is. Mine was tingly to the point of numbness and was worst in my feet. That meant that it was affecting my walking and was highly uncomfortable. In my discussion with my onc, he indicated to me that the Neurotin was not for me because that was used more for actual pain, like from lupis or shingles. That is not what I had.

    I don't know if any of this is applicable to you in any way, I just wanted to comment because it has been one of the most troublesome of my side effects.

    I hope that you are able to find a solution very soon since ongoing pain as you describe is so debilitating and, as you say, depressive.

    You have every positive thought and my prayers. Best of luck.

    Tom (DLBCL-4-7/10)
  • allmost60
    allmost60 Member Posts: 3,178
    tcvine said:

    Neuropathy
    Hi Schult,

    So sorry to hear about your difficulties. But, congratulations on being cancer free again!

    I am responding because one of my most difficult side effects has been neuropathy. I was on R-CHOP for 3 (out of 6) cycles when the neuropathy got much worse. I spoke with my onc about it before my 4th treatment and he told me that he was going to reduce my dosage of vincristine because the neuropathy could get worse and could become permanent. (That's what he told me.) With the reduced dosage my neuropathy has not gotten worse, but not better. However, I never let it get to the point that it was as painful as yours is. Mine was tingly to the point of numbness and was worst in my feet. That meant that it was affecting my walking and was highly uncomfortable. In my discussion with my onc, he indicated to me that the Neurotin was not for me because that was used more for actual pain, like from lupis or shingles. That is not what I had.

    I don't know if any of this is applicable to you in any way, I just wanted to comment because it has been one of the most troublesome of my side effects.

    I hope that you are able to find a solution very soon since ongoing pain as you describe is so debilitating and, as you say, depressive.

    You have every positive thought and my prayers. Best of luck.

    Tom (DLBCL-4-7/10)

    Neuropathy
    I have not experienced it to any great degree. Two fingers and one toe get tingly and numb, but nothing as painful as others experience. It's more of an irritant for me, but doesn't interfere with use of my hands or walking. My chemo treatment is CVP-R which I think is less harsh than the R-CHOP. Hope you can get some relief soon.
    Love...Sue (FNHL-2-3A-6/10)
  • yesyes2
    yesyes2 Member Posts: 591
    allmost60 said:

    Neuropathy
    I have not experienced it to any great degree. Two fingers and one toe get tingly and numb, but nothing as painful as others experience. It's more of an irritant for me, but doesn't interfere with use of my hands or walking. My chemo treatment is CVP-R which I think is less harsh than the R-CHOP. Hope you can get some relief soon.
    Love...Sue (FNHL-2-3A-6/10)

    I experienced neuropathy while I was receiving my RCHOP for aggressive B cell lymphoma earlier this year. After my first round my onc asked if I was experiencing any tingling or numbness, and I was. This progressed with every round and after the second or third round my dosage was reduced by 1/2. On my 6th and final cycle I did not receive any vincristine, cause of the neuropathy, onc said this drug was not that important.

    To this date there are days when I have the tingling in my finger tips and toes. I have a friend treated with RCHOP 4 years ago who still has no feeling in his lower legs and feet, a major problem. Vincristine is a very nasty drug, known to cause nerve damage which does not always reverse, and can come back at any time, even years later. Ain't that great!!!!

    I'm very sorry you are having to go through this and hope you can find some relief for the pain you are experiencing. Have you perhaps tried acupuncture, wonder if that could give you some relief? Just a thought.

    Blessings and good wishes to you,
    Leslie
  • scuttlebug
    scuttlebug Member Posts: 59
    chronic pain
    i have chronic pain and i feel like my onologist didnt believe me either i have found a pain center the doctor there is more understanding i think its where the tumors have pressed against our nerves and damaged them. denise
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member

    chronic pain
    i have chronic pain and i feel like my onologist didnt believe me either i have found a pain center the doctor there is more understanding i think its where the tumors have pressed against our nerves and damaged them. denise

    I had it
    I too had CVP & R and had neuropathy in my hands and feet/legs. Mine affected my fingers, writing, holding, typing the most. The 4th treatment, it got so bad my onc cut out the vincristine for the last 2 rounds. It took several months for the leg cramps to go away and to feel steadier on my feet. Mine has gotten better and I don't suffer from it anymore.

    I am sorry you are in so much pain. I am a big advocate for acupuncture. Maybe you could talk to someone who does it in your area to see if there is anything they can do to help?

    Take care and I wish you good luck!
    Beth
  • Michele23
    Michele23 Member Posts: 168
    dixiegirl said:

    I had it
    I too had CVP & R and had neuropathy in my hands and feet/legs. Mine affected my fingers, writing, holding, typing the most. The 4th treatment, it got so bad my onc cut out the vincristine for the last 2 rounds. It took several months for the leg cramps to go away and to feel steadier on my feet. Mine has gotten better and I don't suffer from it anymore.

    I am sorry you are in so much pain. I am a big advocate for acupuncture. Maybe you could talk to someone who does it in your area to see if there is anything they can do to help?

    Take care and I wish you good luck!
    Beth

    Dealing now
    Doing Treanda/Rituxan just finished 3 round.Really didn't know why I was dropping things and had pain in my feet and tingling in legs.So glad once again I'm not so crazy. Michele Dx95 low grade follicular stage 3
  • KC13167
    KC13167 Member Posts: 215

    chronic pain
    i have chronic pain and i feel like my onologist didnt believe me either i have found a pain center the doctor there is more understanding i think its where the tumors have pressed against our nerves and damaged them. denise

    Pain
    Denise,

    I too suffer from long term pain as well as numbness following a successful 6 rounds of R-CHOP. The tumor that originally brought me to the DR, was one that was pressed up against my spinal column, outside of my spinal cord. As you had stated, the pain is from a tumor pressed up against nerves for such a long period of time that the damage it caused is no longer reversible. Walking up the stairs and getting both in and out of a car are challenging events. There are times when it is impossible for me to do either of these things due to the pain and fatigue that I'm sure is caused by the chronic pain.

    I have seen an orthopedist surgeon in hope of further pain management. The orthopedist stated that I am not a candidate for steroid injections (nerve blocks) because he doesn't feel safe injecting a steroid so close to were an active tumor was. He stated that decreasing the body's resistance in that particular spot may encourage the tumor to grow back.

    My oncologist has me on short and long acting morphine. Most of my day is spent in a pain level of 5. It had been worse. My family practice doctor poo-poo's my pain and suggests yoga for my "lumbago". I complete a daily core strengthening routine.I don't know how to communicate effectively with her, helping her understand how badly this pain affects me. I'd appreciate any ideas on this. Kellie